If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

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  • HOW TO HELP

    [HOW TO HELP]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-11-02 08:34

    Hi Everyone!

    I just wanted to share with you some information. I contacted my local american heart association to start an AMERICAN HEART WALK in my area. Unfortunatley they don't have one here so, I opted for the better solution. I will be joining several in Western New York where my brother Jason lived. I will be starting a friends & family team so we can call it TEAM JASON. I have shared my story with them and I encourage you to share yours with everyone and anyone that will listen.

    I plan to bring this HCM to the forefront. Contact your local American Heart Association to see how you can help.

    Julie P.

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    [Re: HOW TO HELP]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-11-02 09:23

    That is wonderdful to hear! Make sure you really educate them because according to Sarah their website is outdated! I will look into what I can do in my area! Have a great weekend.

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    [Re: HOW TO HELP]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-11-02 14:09

    Dear Julie,

    Good for you!

    FYI, as was mentioned in some other posts, the HCMA is working to bring a public awareness campaign about. The November issue of Esquire magazine has an article about alcohol septal ablation for HOCM that will open a lot of eyss as well.

    The HCMA is acutely aware of the lack of visibility that HCM has in the general community and if you call the office you can get details on how to start screenings in your area and/or fight for AEDs in your schools (the law for AEDs to be in public places has passed but it doesn't include schools or playgrounds).

    A sample letter for a letter-writing campaign to our elected officials will also be posted shortly.

    While the AHA is a fantastic organization, they have not championed the cause of HCM -------yet. Hopefully we can all bring that about.

    take care,

    Sarah

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    [Re: HOW TO HELP]

    Author: Patricia wonderly (---.56.237.70.Dial1.Buffalo1.Level3.net)

    Date: 10-11-02 14:34

    Hi julie:

    I was just contacted by the AHA of WNY to contact you, and now I found your name on this sight,which I suggested that visit.(you already know)

    As a suvivor of HCM and a volunteer in the WNY AHA, I hope you become involved. Your families story is very important. I have shared my story at several functions in order to inform people of HCM. Additional spreading of information would be terrific.

    I was actually the inspirational honoree at this years Buffalo Heartwalk. I beat the letters HCM into peoples memory during my speeches. I encourage you to form a team for your brother. Participation and information can go a long way.

    Good luck with your efforts. I'm sure Jason would be proud of your interest in informing others.

    Tricia

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    [Re: HOW TO HELP]

    Author: betsy trawick (168.8.208.---)

    Date: 10-11-02 14:47

    Good for you! Actually, a friend of my son, Evan, has volunteered to captain a walk through her company, Sun Trust bank, and all of his friends, people who didn't know him and of course his family will be walking for Evan on Nov. 16th in Heart Trek here in Atlanta. Good luck with your walk.

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    [Re: HOW TO HELP]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-13-02 21:05

    Good news bad news guys...

    While I would like to report otherwise I can not.... The AHA has done nothing to support the HCMA, nor patients with HCM around the country.

    Your funds are going to run a multimillion dollar organization that returns nothing back to HCM research, awareness or education.

    We have asked the AHA to print educational brochures, we were told NO.

    We asked for them to distribute our information, we were told NO.

    WE do attend the AHA conference each year, at our expence and give out information to doctors, at our expence, and we have been granted a "free opublic service booth". This we are very thankful for. Imagine my suprise when this year we were told the booth was going to COST US nearly $3000.00!! I went through the roof! I called and asked HOW this could be, I was told that AHA had "arrangements" with other groups for free space at there meetings so they had to give them free space in return ( ACC, NASPE, and other large conferences) When I said I would go to the President of the AHA and see what he said about that....then we were granted a free public service booth again this year, with no word on what is going to happen next year.

    Contact your local AHA and ask them what services they provide for those with HCM? I think you will be surprised at how little they even know about HCM - Oh several major cities have simply given the HCMA's number as a source of information although it is not the "official AHA" response I have heard from several cities and do that those employees for caring enough to reach out to find the information.

    Each year we attend the AHA it costs the HCMA nearly $2500 in air, hotel and materials to educate the participantsof the meeting. These funds are collected in fund raisers and donations - Your support is always welcome.

    Sincerely,

    Lisa Salberg

    President

    HCMA

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    [Re: HOW TO HELP]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 10-14-02 12:57

    I would just like to add that the AHA has NOT assisted or even shown for any of the heart screening events we have had in Kansas and Arizona.

    I too am disappointed in the "non-support" this multi-billion dollar non-profit organization has for HCM patients and HCMA. I recently had lunch with two large regional AHA reps in the Kansas area. They were apologetic and hoped that AHA would be more visible in our future events.

    Lets work on AHA, too. Should we start a letter campaign to our local AHA reps?

    Let me know where we might get the best attention, local or national?

    Sharon

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    [Re: HOW TO HELP]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-14-02 13:12

    I would back you 100% Sharon! I hope to see a change of heart (ok I could not pass that one up!)

    Lisa

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    [Re: HOW TO HELP]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-14-02 17:15

    As I write I am on the phone with the AHA’s Eastern North Carolina division … and just asked the woman who answered the phone if she has any information for me on HCM or HOCM and she just said, “Can you tell me what that stands for?” I just told her and she asked me what hypertrophic cardiomopathy is … I provided her with a brief description and some symptoms and she said she never heard of it! She has no information available! Interesting … I just got disconnected. Calling back. She wants my contact information because she thinks she might have a brochure available that she can mail me. I told her I didn’t have time to wait for information via snail mail. I told her I would really appreciate it if I could speak with a person about this heart condition. I can hear her rummaging through papers … she just informed me that she doesn’t have any information available at her fingertips! She asked for my contact information again … I told her I would really appreciate it if I could be transferred to a live person who might know something!!! Ok … she is transferring me to a live person … ok - this person, too, doesn’t know what “HCM” and “HOCM” stands. I just told her what the letters stand for and she doesn’t know what it is. Said asked if I checked their “comprehensive website” and I said I didn’t have Internet access. I just asked her if I could speak to another individual and she said that they do not have any “medical staff on board.” She just suggested that I call my local health department or a local hospital. What a joke! To be continued! ~ Erica

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    [Re: HOW TO HELP]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-14-02 17:18

    Erica - This is a common responce and if we want it to change then we must make them change...simple as that...

    keep us up on the story... good luck on hold!

    Lisa

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    [Re: HOW TO HELP]

    Author: Julie Petitpas (---.proxy.aol.com)

    Date: 10-15-02 11:01

    Dear Lisa, I just got back from visiting my family in Western N.Y. Helping in everyway I can to ease the pain from the loss of my brother Jason to HCM. I was excited to see so many resposes to my post then quickly became disturbed. How upsetting it is to hear that the organization that seemed so willing to help knows so little about this condition. Do you think they are just interested in my story so they get get me to raise money for them? I live in Rhode Island but, they were willing to work with me because my brother lived in their area. My family is going to have it's own fundraiser on November 10th (the day before what would have been Jason's 21st birthday) to help raise awareness and start a scholarship fund in his name. Are you saying we shouldn't support the AHA or that we just need to get out there and educate them?

    Sincerly,

    Julie P.

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    [Re: HOW TO HELP]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-15-02 11:48

    Dear Julie,

    While the AHA is a good organization for what it does, it doesn't give us a dime and doesn't support screening for HCM. So any money you raise for the AHA goes to coronary artery disease --for the most part.

    If you want to raise money for HCM awareness and screening, then you should talk to Lisa about doing a fundraiser for the HCMA.

    The AHA needs to hear from HCMers that they are not doing their job. It is unlikely that giving them the carrot first will get them to change their stripes (oh, what a mixed metaphor that was!) But I think you know what I mean.

    I can't tell you not to give them money, but if your goal is to raise money for HCM research/awareness/screening, then you need to know that the AHA doesn't do any of that and has no plans to do so in the near future.

    Sarah

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    [Re: HOW TO HELP]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-15-02 12:27

    Why won't the AHA support HCM education, awareness, and prevention? They mention the condition on their website, (although outdated), indicating their own awareness-recognition ... so why won't they take it up a notch? Knowing this will aid me in my efforts to make them more aware and possibly give us a chance! Thanks!

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HOW TO HELP]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-15-02 13:01

    The sage continues. I am trying to speak with someone within the American Heart Association National Center in Dallas, TX. (1-800-242-8721). All of their reps are busy ... holding. I am going to inquire about their rationale behind their lack of HCM support. Talking with Anna. She doesn’t know what HCM or HOCM is. I told her the heart condition is mentioned on the website. She just asked me if HCM is the same condition as CPR. I am requesting to speak with her supervisor. She put me on hold. Holding … now speaking with Dick, Supervisor. He is not sure what HCM is either. I spelled it out and he wants to know how he can assist me. I asked him why their website is outdated and why there is a lack of support on their part and he said I will need to speak with the AHA’s headquarters in Dallas. I told him that I dialed the Dallas number listed on their website … he apologized and said I was rerouted to their PA line since all their lines must be busy. Again, I mentioned that their website information on HCM is outdated to sound him out. He informed me that he can inform the National Center with my displeasure and he told me he is surprised that the website is not current … he said the website should have current information since it was just updated “last year.” I told him that I would like additional information besides the “outdated” information. He said I will need to personally speak with the Science dept in their Dallas, TX headquarter office. I will call the AHA’s science dept later today or tomorrow and get back to you all with an update. The saga continues … ~Erica Stolzenberg

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    [Re: HOW TO HELP]

    Author: Mary Sharp (---.net299.fl.sprint-hsd.net)

    Date: 10-15-02 16:53

    Isn't it funny how much money goes into researching things that can be prevented. I mean just think about how many heart attacks could be prevented if people just laid off the Big Macs or how much lung cancer would probably decrease if people stopped smoking. I don't know it just angers me so much when people hurt their bodies by negligence and make money off of it. Like the lawsuit where people are suing McDonalds because they ate too many hamburgers and are overweight.

    Mary S.

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    [Re: HOW TO HELP]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-15-02 17:21

    Mary ... I agree! Our nation has its priorities in the wrong places with certain subject areas! Think of all the money we are pouring into a cure for AIDS, lung cancer, etc! I'll put money on it that they have already found vaccines and cures for illnesses that we continue to pour $ into! The reality is that we are a money making country ... the pharmaceutical companies would lose tons of money if a cure was found for 1/2 the ailments out there! There is no way the government would allow us to find out if a cure for AIDS, Cancer, etc exists. So instead, people will suffer and the medical industry will continue taking our hard earned dollars and avoid areas that really could really benefit, (HCM.)

    Once reality sets in, I think we should try to redirect our sadness, anger, and frustration ... whatever you are feeling.... towards the fight for the advancement in the field of HCM. Think of all the negative energy we are filled with towards this disease. If we could turn our negative energy into something positive ... WOW ... watch out HCM ... you are a goner! All of our energy could be poured into HCM education and advocacy! I truly believe we can do this! Smile and please know that you are not alone! Before you know it, people will never have to ask what HCM is every again! It won’t happen over night but poof … it will happen! This I assure you! ~ Erica
    NOTE: This is a post from the previous forum message board.

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